There is a reason why I keep most of my blogs sounding strictly factual, focusing mostly on the goings-on of life. I hate being personal. It’s a rare occurence for me to blog about things that exposes my emotional well-being. I hate doing that. What I feel is none of anyone’s business but myself.

This isn’t to say that I don’t have the need to vent my feelings. I have plenty to write on that subject. But suffice to say, they are just too raw for me to share with anyone.

However, dealing with the diagnosis of Down syndrome has changed almost my entire outlook on life, more than I care to admit, and all in a matter of mere weeks. Things that I worried about or wished I had, now seem very petty. Even my professional focus in life is being shaken. “Ignorance” now has a whole new meaning to me.

So I need to vent this. Just once.

Like all other mothers with special needs children, I can’t help but ask, “why me?” Granted, each day gets easier for me, they really do. But there are moments when my anger and despair would seep through and I would get angry at myself, at God, and at everyone else around me, as if I’m facing this all alone. But I know this is actually just self-pity, and I’d just as quickly slap myself mentally out of it and continue on with life.

One thing I always thank God for is the Internet. I get so many uplifting and enlightening information from all the sites and resources out there to help me understand Down syndrome better. Reading the scriptures that were pointed out in God, Do You Care? gave me hope that Edry is meant for bigger things in life than I would ever fathom. Being a part of the DS community in the BabyCenter Forums has educated me about the real issues that parents with DS have and need to deal with daily.

But the earliest source that tugged at my heart was a short fictional story written by Erma Bombeck called God Chooses A Mom For A Disabled Child. It was as if I was being punched in the gut. Happy… impatient… feeling of self… independent… selfish. Those are words that describe me.

You see, after I had Ezra, I thought that that’s the end of it. Three kids are enough. Just as I have planned. And I was happy. I was working and well-paid, my children and my husband and I were healthier than ever, and we had almost everything we ever wanted. Just as I have planned.

And then Edry arrived. And my life turned upside down. Everything changed. Yet… everything is the same. It’s so hard to describe it.

Further down Bombeck’s story was even more self-revealing for me:

… “Yes, there is a woman I will bless with a child less than perfect. She doesn’t realize it yet, but she is to be envied. She will never take for granted a ‘spoken word.’ She will never consider a ‘step’ ordinary. When her child says ‘Momma’ for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations.

“I will permit her to see clearly the things I see — ignorance, cruelty, prejudice — and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side.”

Those words spoke directly to me. As much as I hate to admit it, those are the exact kind of things I wish to experience in my life. And I’ll take it whichever way I can.

Thank you, God, for blessing me with Edry.

And thank you, Edry, for giving my life meaning.

So now that I’m done telling you my sappy story, I assure you that you won’t be reading anything like this ever again. Ever!

Our ISP session at KDSF KK two Fridays ago was brief, but it was worth it in my opinion, mainly because I have learned a few techniques I can easily do at home which would help exercise Edry’s motor skills. I decided to create a short clip showing these techniques, realizing how difficult it is to find therapies online that specifically focuses on children with DS and a detailed explanation on how to go about doing them.

Refer to the video above, which contains annotations describing each of the following exercises in detail:

1. 0:08 Addressing tongue protusion
2. 0:48 Strengthening of the jaw
3. 1:45 Pelvic and leg joint toning
4. 2:20 Shoulder and arm toning #1
5. 2:40 Shoulder and arm toning #2

One technique I didn’t manage to capture in the video was the neck massaging technique. The way to do that is to rub the back of his neck, from the base of the head to the base of the neck in a downward motion, and repeat 5 times.

Eric did a great job recording them with our simple digicam; you’ll see the cameraman making a brief appearance. Little Ezra helped, too, by adding some “background sounds” on top of the sound of Playhouse Disney channel already playing on TV — that is, if he wasn’t climbing and pushing me while I was in action.

I hope the video helps to show not only the massaging techniques, but also the realistic environment or condition in which your baby is in. He ain’t gonna like it, and you’ll get all sorts of reaction from your little one, from the constant movements like what you see in the video, to crying and resisting which was what happened when I first did it on Edry. The therapist mentioned that such resistance is normal in an infant due to their tactile-defensiveness, but will subside with frequent stimulation to lessen their hypersensitivity.